I would like to know if anyone receives any benefits because they cannot work due to their lupus. I find it hard to get up on a morning,

but I have to push myself. I have been a foster carer and a child minder, but due to my illness have had to decide not to continue with doing either. I find keeping up with looking after our little boy is top priority, then preparing and cooking meals and washing and ironing comes next. Washing floors etc just knocks me out for days on end and a friend of mine has been helping me out with the huge chores.

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27 Replies

  • I understand how you feel. I struggle every morning to get to work for 8:30 start, except Friday which is a 7:30. My usual start is the argument with my poor hubby who is trying to wake me so I'm not late. I then struggle out of bed waiting to see how the feet are aNd if the body will move. i never get time for makeup or breakfast just coffee. The children have learnt to sort their own breakfast and get ready and they do well. Although most days my son misses his bus so I give him a lift on the way to work.

    I have a job where making a mistake is not accepted, it could cause harm to someone but its the only thing I have done since I was 18 and I have paid superannuation for 28 yrs which I would like to keep building up. It looks like due to the fact I can drive myself to work and stay awake enough to communicate and do my job on more than half he days a week, I'm okay I'm fit to work. I'm not even entitled to a pass to park in a parking space that allows me to get out the car easily. I often feel so tired when I get there I need the door wide open.

    I'm sure people think I put it all on because I smile, I laugh and I do my job like there is nothing wrong most days.

    What they don't see is the state of he house, the lack of cleaning and the fact I am often in bed for an hour or so as soon as I get home.

    Just before all this happened we extended the house, believe it or not I was the main labourer, knocking down walls, carrying plasterboard up 2 flights of stairs. Now I wish we hadn't bothered. The myositis means I struggle up the stairs. The Lupus means I haven't the energy and the mortgage means I don't have a choice I need to work to pay the bills

    I've worked, cared for others, all my working life and I'm entitled to nothing

  • I'm tired and struggling at the minute. I have better days and I do love my job. I hope I am a true Carer. I read about and have experienced people who have a different idea to what a caring job is about. I would so love to have the choice though whether i worked or not, I get so stressed about being off sick.

    If you try to claim get advise. Someone on here mentioned disability advice services to help with the terms needed to describe your problems to get somewhere successfully.

    My problem at work is the fog with fatigue. When that happens I go home.

    Take care

  • Hi Whathappened

    Sorry to read how your struggling to work with Lupus. Have you tried claiming DLA or PIP as it's now called?. Go to your local Citizens Advice Bureau who can advise what disability benefit you could apply for and help you fill the forms in. The beauty of the above benefit is you can have it and still work as it's purely about how your health affects you on a daily basis. Hope I've helped and good luck X

  • I didn't realise you could get anything unless pretty bad with everything, wheelchair etc. Thank you. Its awful there must be loads of us struggling

  • It's worth a try but take their advice first .x

  • Hi Elizabeth 57

    I am sorry you are struggling with Lupus. My advice would be to go to your local Citizen's Advice Bureau who would go thru with you how to claim Disability Benefits and help you fill in the forms. It's worth a try.X

  • Hi to both Whathappened and Elizabeth57, in short yes benefits are available to those who are unable to work. Both ESA and DLA (or new PIP as it's called) are available to those too unwell to work, and as misty14 says PIP is also payable to those who remain in work.

    I think the most difficult part is evidencing how your illness affects you on a daily basis, although I do believe that the new PIP is more understanding of illnesses that fluctuate i.e. lupus/depression etc. My advice would be to make enquiries, particularly to Elizabeth57, if you're not working now you've nothing to lose in applying. In my case it was the support and reports of my consultant that secured me entitlement to benefits when I finished work. However (whathappened - particularly relevant to you) I was awarded DLA (now PIP) when I was still employed and given a blue badge, you do not have to be on benefits to be awarded a blue badge - my GP completed the form on my behalf and I was issued one within weeks, which for a while meant with benefit and badge I remained in work a little longer before eventually taking ill health retirement.

    This took quite some time but again due to medical reports I was given access to my pension benefits when aged 44.

    I wish you both all the best and encourage you to apply for benefits you are entitled to, I really feel for you as I easily recall how working full time was only making my ill health even worse and it was such a relief (althoug I was also devastated) to finish work.

    Take care

  • Thank you. I need to look in to it. I don't know if I'm bad enough. I fear I probably get paid too much but I am beginning to realise that I'm probably going to reduce my hours again. I went back to 30 when hydroxy kicked in but its been a heavy few months at work. I decided to go back up at the wrong time of the year and its taken its toll. My husband works for himself, he works loads of hours and he worries re money. I worry that if I'm not bringing in my pay he will be out all the time. As it is he is out from 8/9am to 8/9pm. Mind some of that is his own fault I'm sure it's not necessary! It's why we have a tourer caravan, so I can insist on going away for the weekend or he'd work all that. I put up with the painful night to have him away from work. I will look into it once I come to terms with the fact I need to (does that make sense )

    Thank you x

  • I am so sorry to hear how hard things are for you at the minute. My mum has had Lupus since she was 27 and is now 57 and is in a bad way herself. The best thing you could do is if you apply for the DLA go to the CAB and get them to help you with the form becasue they are alot of work, but it is worth it. If you do apply and do not get it then try again, i get DLA myself and i can give you some advice on what sort of things to put into the form if you want, if you do just E-mail me at hannahsolomon1989@yahoo.co.uk

    I hope you start to feel better, take care.


  • Hi If you also contact Lupus UK (Paul or Hannah on this site_ ....they can send you electronically the info on PIP. It is also on the Lupus UK website. Good luck xx

  • Well Elizabeth get yourself to CAB. You really should try. You cannot manage to foster at the minute you wouldn't manage.

    Give it a go, you have nothing to lose. I'm still thinking about it especially, the parking badge for bad days.

    Good luck

  • Hi there everyone who has replied to my question. I do apologise for not introducing myself properly either. I am 56 and was diagnosed last August with lupus due to a skin rash I had through been out in the sun and then my joints beginning to ache. Through the gp I was sent to a rhematologist and after various tests for my organs and blood tests which didn't give a satisfactory result, I was given a skin biopsy which resulted in a diagnosis of lupus. I have felt tired and fatigue for some time now, but didn't have answers as to why, now I know. A few weeks ago I went through a bad patch for about 6 weeks or so where I couldn't hardly drag myself out of bed let alone do housework, but I had to, but I had to. I ached tremendously and so tired, the head aches were horrendous too. Before I had my bad patch I had washed our living room wooden floor, which is rather large. Whilst going through this bad patch all I concentrated on was looking after our son, meals, washing and ironing and a friend kindly offered her services to come in and wash floors that needed doing, cleaned windows etc. I can't wait till she's back off her holidays and arranges to come round again to help me out.

    During my bad patch I rang the hospital helpline and the nurse rang back and advised me to have another steroid injection which do help a little. I am on hydroxichloquine, and 5mg predislone (steroid). I do feel that the injection is wearing off now, I find they only last me about 2 months or so. During the warm sun we've had recently although I have worn protection my rash is back again, so no more sun for me!!!!

    As I said I have been a foster carer and we have adopted one of our placements we had, a lovely little boy who is coming up 4 and we had him from 5 days old. He is put first and foremost on my priority list and everything else I leave. At the beginning of the year I was thinking of going back to childminding, but the thought of all the paper work involved and if I wasn't able to cope when I was having a bad patch, which is very often so I gave up on the idea.

    Anyway I'm going into our local CAB next week to one of their drop in sessions to see if I can claim anything as there is no way I could work not really.

    Sorry about the long reply to everyone, hope I don't sound a bore.

    Look forward to making new friends through this and knowing that I'm not alone in how I feel is a relieve!!!

    Once again thanx

  • Hi elizabeth. I can no longer work due to Lupus and Hughes and I get ESA so you might want to claim for that as well as anything else you are entitled to; as others have said, Citizens Advice or similar organisations are there to help, if you are not sure which benefits you may be eligible for and help you with filling out forms, etc.

    It also pays to put in a bit of graft at home - I had to fill in a very long, hand written form shortly after I began my ESA claim. I made sure that I left myself a couple of weeks to do this and drafted it in advance and then gave as many practical examples of things I couldn't do, were difficult, etc, as I could fit in the space under the sections that I thought applied to me. And don't forget that some of the mental descriptors may also apply - for example if you have problems concentrating, etc, this may affect your ability to navigate in unknown locations, etc.

    Eventually I was called for an ATOS Work Capability Assessment, a face to face interview. I had heard how gruelling these can be so I spent a month preparing (like you I have to pace myself carefully and do things in manageable chunks) - the descriptors can be found online via the DWP and ATOS websites (although ATOS may not be involved for much longer, as you are probably aware from the news). Work through them carefully and, again, think of as many examples as possible of how you are restricted under the different activity descriptors. Plus think about a typical day, ensuring you get in all the details of what is difficult, your worst days, etc. But be prepared for the WCA to actually not work in that fashion i.e. they will ask in very round about ways about your life, if my experience is anything to go by. Again, Citizens Advice can help here, although I also used the great advice given on Action for M.E.s website (if you search a bit, you'll find it; can't recall where off the top of my head).

    All this probably sounds daunting and rather worrying. I found it both but, in the end, I have found it to be worth it - I have been put in the ESA support group and continue to receive benefit and get NI contributions paid. So I can only encourage you to go for the things you are entitled to and make use of the resources that are out there to help you.

  • Hi there, thanks for the advice. Please can you tell me what ESA as I'm unsure? Maybe brain not working. I do find when I go shopping especially supermarket my head is a daze. Is this all part of lupus. I find it hard concentrating on what we need even with a list. I used to love going to shopping malls and going out places, but now I find it rather difficult and will not go on my own anywhere if I can help it. I wait till hubby is around and can go with me. I tend to stay in with the little one and concentrate on him with numbers, counting, writing and drawing etc and leave the outside such as park to his dad, although if I have someone to go with such as my daughter I will go to a soft play with him, so I am indoors, but again I have someone, although I do attend a local children's centre at times and he is at nursery 5 mornings a week. He starts full time school in September this year. I expect every one else who feels like me wants to feel better and hates feeling like they do.

  • By the way whathappened pip is not means tested and when in work people who are entitled still receive it. I too was in a good wage and was shocked to be awarded the benefit. Again, good luck

  • You can get disability living allowance go to you local CAB office they will help ,

  • Hi Elizabeth. ESA stands for Employment and Support Allowance and may be paid if you are too ill to work. Citizens Advice should be able to tell you all about it but I am also sending you the link to the government website, which should also be of help:


    I'm so sorry you are feeling down; I get very down too at times. Like you, I crave a bit of normality. But hopefully you will be able to claim some benefits and that will make your life a little easier. Very best to you.

  • You should look at claiming JSA (Support Group) and either DLA or PIP, depending whether the newer PIP has been rolled out in your area Elizabeth. I'd start with a visit to your local CAB. "Pushing" oneself is not a good idea with this disease although not always possible to avoid. Those of us who manage lupus best in the longterm are able to rest when we need to. Hope that helps x

  • I wish you the best of luck I have all the symptoms of Lupus but haven't been diagnosed and I have severe COPD level 4 so I know what your feeling getting out of bed is like running a marathon. I have been turned down for PIP and ESA I would recommend you get someone to fill your forms in for you.

    I would like to set up a on line petition to get the law changed so that people like us get fast tracked I put in another claim for ESA June 13 and still nothing

  • I got my Social Security years ago not knowing that I had Lupus. I a lot of the symptoms but was not diagnosed yet. You first have to fill out for Social Security Disability. You will need a doctor that can provide the support that you have Lupus or anything else that will benefit your claim. They will turn you down the first time. Then apply again and you will probably be turned down again and that is when you get a lawyer that deals with Social Security benefits. It will take anywhere from 1-3 years depending on where you live. I also got my Senators involved to get my SS Disability earlier. Like I said just be patient and always have those who support you around. Also groups like this are great. I hope this will get you started.

  • I was on incapacity benefit a year ago, I was medically retired because I couldn't do my Job then when the government stopped the incapacity and made a lot of people go for a assessment with ATOS which I had

    to go they said I was fit for work basically because I could move and communicate they didn't care how ill I was

    and had to go on JSA and look for work or I would get no money, I did appeal against it and after a year I had my appeal and it was awarded in my favour, but the stress of waiting for the appeal and the pressure of having to look for work and attend the Job centre and being put on a course made me feel so ill I now have flare-ups every month. Anyway sorry about the rant but I am now on ESA so I am sure you should be able to get ESA

  • I found with my forms for ESA, I sent in copies of hospital letters and appointments, anything that backs up your claim will help. Also if you get refused, Appeal.

    If you get refused go to your local Citizens Advice Bureau, and they may know of a charity/organisation in your area that will help with your Appeal. I was refused but I appealed and I won.

    Good luck xx

  • In the US we all contribute to a social security tax for retirement if one works legally. THat is if one is paid and all deductions are taken out. Taxes, Taxes & MORE TAXES. BUT I UNDERSTAND THE BRITS HAVE IT REALLY BAD TAX WISE.

    I FEEL FOR U. I DON'T DO MUCH OF ANYTHING . LAUNDRY when I FEEL up to it. Lately I've been really out of it.zombie like in the morning. Which is a pretty normal morning . I just make it to the coffee machine to make my coffee ..hoping i get a good jolt & feel like doing something. Today i just took a sleeping pill & went back to sleep. Coffee didn't do the trick. The cat kept me away last nite crying to get out of my room & I just kept falling back to sleep. And Cat Kept On Crying TO GET out. Finally I got up & let him out. But suffered lack of sleep terribly so had sleeping pill after coffee

    . Give yourself a break & rest. Often times I have energy just not much lately.

  • Yes I do now after fifteen years.i fell in work and everything snowballed and twelve months later I lost my job but was awarded ESA as I do have a vulnerable back which I had had surgery on twice so this sort of pushed me in this direction and I went to the citizens advice to fill the forms in and I succeeded finally good luck keep applying and going to the right place to have them filled in xx

  • I was on disability from age 51 to 55 because of lupus. Although I am working again, I find I need to pace myself and take two short naps each day. At 62, I am looking forward to reaching age 65 when I can slow down a little. As a single older adult, I worry about finances and therefore push myself a lot of the time.



    Have you sought applying for the above?

  • Hi there,

    It's a while since I posted on here, but in answer to have I applied for any benefits, yes I have, I applied for pip. I went to CAB a couple of months ago or so and they helped me fill in the forms. Still awaiting to hear anything. I had a holiday a couple of weeks ago in Tenby, Wales. We had lovely weather most of the time. When we were on the beach I was covered up with sun cream, uv protective clothing, uv beach tent and umbrella, didn't get sun burnt thankfully. Pushed myself so much to do things and came home feeling very, very tired and aching and still am recovering. Our little boy has just started full time school today so am kind of trying to relax, ha,ha,ha.........

    Hope everyone has had a good summer holiday.

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